The Human Fertilisation and Embryology Authority has advised that it has made no assessment of the estimates previously made by the Wellcome Trust Centre for Mitochondrial Research at Newcastle University, as the number of treatments to date in the United Kingdom is so low.<\/p>"} , "answeringMember" : {"_about" : "http://data.parliament.uk/members/4948", "label" : {"_value" : "Biography information for Lord Markham"} } , "answeringMemberPrinted" : {"_value" : "Lord Markham"} , "dateOfAnswer" : {"_value" : "2023-06-14", "_datatype" : "dateTime"} , "isMinisterialCorrection" : {"_value" : "false", "_datatype" : "boolean"} , "questionFirstAnswered" : [{"_value" : "2023-06-14T13:40:46.277Z", "_datatype" : "dateTime"} ]} , "answeringDeptId" : {"_value" : "17"} , "answeringDeptShortName" : {"_value" : "Health and Social Care"} , "answeringDeptSortName" : {"_value" : "Health and Social Care"} , "date" : {"_value" : "2023-06-06", "_datatype" : "dateTime"} , "hansardHeading" : {"_value" : "Hereditary Diseases"} , "houseId" : {"_value" : "2"} , "legislature" : [{"_about" : "http://data.parliament.uk/terms/25277", "prefLabel" : {"_value" : "House of Lords"} } ], "questionText" : "To ask His Majesty's Government, further to the Written Answer by Earl Howe on 15 July 2013 (HL1303), what progress the Human and Embryology Authority is able to report that may correspond to previous estimates that mitochondria replacement techniques could \"save the lives of up to 10 babies who are born every year with a severe form of the disease, such as those with high levels of mutations\".", "registeredInterest" : {"_value" : "false", "_datatype" : "boolean"} , "tablingMember" : {"_about" : "http://data.parliament.uk/members/738", "label" : {"_value" : "Biography information for Lord Alton of Liverpool"} } , "tablingMemberPrinted" : [{"_value" : "Lord Alton of Liverpool"} ], "uin" : "HL8241"} , {"_about" : "http://data.parliament.uk/resources/1625258", "AnsweringBody" : [{"_value" : "Department of Health and Social Care"} ], "answer" : {"_about" : "http://data.parliament.uk/resources/1625258/answer", "answerText" : {"_value" : "
Several of the actions in the 2022 and 2023 England Rare Diseases Action Plans focus on genomic approaches to provide faster diagnosis for people with undiagnosed rare conditions, including genetic conditions. However, for some people living with extremely rare diseases, the complex and rare nature of their conditions may mean that they never receive a diagnosis. We are committed to ensuring that these people and their families also receive the support and care they need.<\/p>
In the England Rare Diseases Action Plan 2022 NHS England committed to \u2018pilot new approaches for patients with undiagnosed conditions\u2019 (action 5). To address this commitment, during 2022, NHS England developed a proposal for a syndrome without a name (SWAN) Pilot Programme for people whose conditions remain undiagnosed. It will progress through the NHS England finance and governance processes and there will be a clearer plan for delivery in the next few months. If the SWAN Pilot Programme expands such that there is a need for a service specification, the normal processes would be followed in terms of engaging with stakeholders, including consulting with patients and the public on the delivery of the Programme.<\/p>"} , "answeringMember" : {"_about" : "http://data.parliament.uk/members/4527", "label" : {"_value" : "Biography information for Helen Whately"} } , "answeringMemberConstituency" : {"_value" : "Faversham and Mid Kent"} , "answeringMemberPrinted" : {"_value" : "Helen Whately"} , "dateOfAnswer" : {"_value" : "2023-05-15", "_datatype" : "dateTime"} , "groupedQuestionUIN" : [{"_value" : "183533"} , {"_value" : "183534"} ], "isMinisterialCorrection" : {"_value" : "false", "_datatype" : "boolean"} , "previousAnswerVersion" : {"_about" : "http://data.parliament.uk/resources/1625258/answer/previousversion/73633", "answeringMember" : {"_about" : "http://data.parliament.uk/members/4527", "label" : {"_value" : "Biography information for Helen Whately"} } , "answeringMemberConstituency" : {"_value" : "Faversham and Mid Kent"} , "answeringMemberPrinted" : {"_value" : "Helen Whately"} } , "questionFirstAnswered" : [{"_value" : "2023-05-15T16:12:18.183Z", "_datatype" : "dateTime"} ]} , "answeringDeptId" : {"_value" : "17"} , "answeringDeptShortName" : {"_value" : "Health and Social Care"} , "answeringDeptSortName" : {"_value" : "Health and Social Care"} , "date" : {"_value" : "2023-05-02", "_datatype" : "dateTime"} , "hansardHeading" : {"_value" : "Hereditary Diseases"} , "houseId" : {"_value" : "1"} , "legislature" : [{"_about" : "http://data.parliament.uk/terms/25259", "prefLabel" : {"_value" : "House of Commons"} } ], "questionText" : "To ask the Secretary of State for Health and Social Care, what steps his Department is taking to support people with undiagnosed genetic conditions.", "registeredInterest" : {"_value" : "false", "_datatype" : "boolean"} , "tablingMember" : {"_about" : "http://data.parliament.uk/members/4618", "label" : {"_value" : "Biography information for Liz Twist"} } , "tablingMemberConstituency" : {"_value" : "Blaydon"} , "tablingMemberPrinted" : [{"_value" : "Liz Twist"} ], "uin" : "183532"} , {"_about" : "http://data.parliament.uk/resources/1190617", "AnsweringBody" : [{"_value" : "Department of Health and Social Care"} ], "answer" : {"_about" : "http://data.parliament.uk/resources/1190617/answer", "answerText" : {"_value" : "
The Department\u2019s National Institute for Health Research (NIHR) supports three Biomedical Research Centres (BRC) and two Clinical Research Facilities that are carrying out research on mitochondrial disease. This includes a project from the NIHR BRC in Great Ormond Street on novel diagnostic and therapeutic approaches for mitochondrial disorders.<\/p>
The NIHR welcomes funding applications for research into any aspect of human health, including mitochondrial disease; it is not usual practice to ring-fence funds for particular topics or conditions. Applications are subject to peer review and judged in open competition, with awards being made on the basis of the importance of the topic to patients and health and care services, value for money and scientific quality.<\/p>"} , "answeringMember" : {"_about" : "http://data.parliament.uk/members/4527", "label" : {"_value" : "Biography information for Helen Whately"} } , "answeringMemberConstituency" : {"_value" : "Faversham and Mid Kent"} , "answeringMemberPrinted" : {"_value" : "Helen Whately"} , "dateOfAnswer" : {"_value" : "2020-05-11", "_datatype" : "dateTime"} , "isMinisterialCorrection" : {"_value" : "false", "_datatype" : "boolean"} , "questionFirstAnswered" : [{"_value" : "2020-05-11T12:03:24.46Z", "_datatype" : "dateTime"} ]} , "answeringDeptId" : {"_value" : "17"} , "answeringDeptShortName" : {"_value" : "Health and Social Care"} , "answeringDeptSortName" : {"_value" : "Health and Social Care"} , "date" : {"_value" : "2020-04-27", "_datatype" : "dateTime"} , "hansardHeading" : {"_value" : "Hereditary Diseases"} , "houseId" : {"_value" : "1"} , "legislature" : [{"_about" : "http://data.parliament.uk/terms/25259", "prefLabel" : {"_value" : "House of Commons"} } ], "questionText" : "To ask the Secretary of State for Health and Social Care, what recent progress his Department has made on research into the treatment of mitochondrial disease.", "registeredInterest" : {"_value" : "false", "_datatype" : "boolean"} , "tablingMember" : {"_about" : "http://data.parliament.uk/members/1576", "label" : {"_value" : "Biography information for Mark Pritchard"} } , "tablingMemberConstituency" : {"_value" : "The Wrekin"} , "tablingMemberPrinted" : [{"_value" : "Mark Pritchard"} ], "uin" : "40538"} , {"_about" : "http://data.parliament.uk/resources/891534", "AnsweringBody" : [{"_value" : "Department of Health and Social Care"} ], "answer" : {"_about" : "http://data.parliament.uk/resources/891534/answer", "answerText" : {"_value" : "
The 100,000 Genomes Project is focussed on recruiting patients, including children, with rare diseases (and their family members) and those with common cancers. These are areas where whole genome sequencing may offer the best opportunity to diagnose disease. From the Project\u2019s pilot phase we have found actionable findings in 20-25% of rare disease patients.<\/p>
<\/p>
The scope of the project does not include screening at birth. The Chief Medical Officer, in her annual report Generation Genome, recommended that that the National Screening Committee conducts a systematic evaluation of the opportunities offered by genomics for present and potential screening practices.<\/p>"} , "answeringMember" : {"_about" : "http://data.parliament.uk/members/4008", "label" : {"_value" : "Biography information for Dame Caroline Dinenage"} } , "answeringMemberConstituency" : {"_value" : "Gosport"} , "answeringMemberPrinted" : {"_value" : "Caroline Dinenage"} , "dateOfAnswer" : {"_value" : "2018-04-30", "_datatype" : "dateTime"} , "isMinisterialCorrection" : {"_value" : "false", "_datatype" : "boolean"} , "questionFirstAnswered" : [{"_value" : "2018-04-30T15:41:08.457Z", "_datatype" : "dateTime"} ]} , "answeringDeptId" : {"_value" : "17"} , "answeringDeptShortName" : {"_value" : "Health and Social Care"} , "answeringDeptSortName" : {"_value" : "Health and Social Care"} , "date" : {"_value" : "2018-04-25", "_datatype" : "dateTime"} , "hansardHeading" : {"_value" : "Hereditary Diseases"} , "houseId" : {"_value" : "1"} , "legislature" : [{"_about" : "http://data.parliament.uk/terms/25259", "prefLabel" : {"_value" : "House of Commons"} } ], "questionText" : "to ask the Secretary of State for Health and Social Care, what lessons have been learned from the 100,000 Genome Project which will help when deciding what genetic diseases should be screened for at birth.", "registeredInterest" : {"_value" : "false", "_datatype" : "boolean"} , "tablingMember" : {"_about" : "http://data.parliament.uk/members/4621", "label" : {"_value" : "Biography information for Darren Jones"} } , "tablingMemberConstituency" : {"_value" : "Bristol North West"} , "tablingMemberPrinted" : [{"_value" : "Darren Jones"} ], "uin" : "138095"} ], "itemsPerPage" : 10, "page" : 0, "startIndex" : 1, "totalResults" : 4, "type" : ["http://purl.org/linked-data/api/vocab#ListEndpoint", "http://purl.org/linked-data/api/vocab#Page"]} }